Friday, 31 August 2012

Veni vidi peachy.

The sun is too low on the horizon for 2 pm.  I've only put out my green garden waste twice since summer began.  Time is flying and my legs are tired from chasing it.

Rukai is up in his bed, fighting the nap again, keeping company with the warm yellow orb on the base of the monitor which tells me all is well and right with him even though he is not beside me.  He is snoring.  I am head over heels in love with that sound.

We are here on the other half of his first year.  He has filled his belly up these past few weeks on baby rice and carrots and yogurt and peas and avocado and decorated his bibs with color like he once decorated his sleepsuits from the other end.  He has tried juice and puckered appropriately.  He does not have any trouble eating.  For a child with Down's syndrome, this is a triumph.  For us, this is one more worry off the list.  Strong mouth = hope for clear speech.  We live on hope these days.  I have tried hope with chocolate syrup, dunked in a cup of tea and grilled with mushrooms.  Hope tastes good.  Just like carrots.

I have now added to the dishwashing three spoons and a monkey bowl, plus one green sippy cup that we'll be replacing with a free flow because I'm so paranoid about that little tongue of his getting too used to being out instead of in.  This is the reality.  As I revel in the first bit, I am bound by the second.  I have never felt so emotionally divided.

To think I was worried about whether he'd somehow end up with red hair a year ago makes me feel like an ass.  I didn't want his life to be hard because of bullying like mine was.  How trivial that seems now.  How hard his life is going to be anyway.  How much extra work will he need just to try and keep up.  How serious we have all become.  How hard I am working on maintaining the lightness inside when life sometimes feels so damn heavy these days.

Ah but how much is he the source of that light.  How much is modern medicine the heavy.  The fat.  The big black bear in the forest of 'what if' trying every day to take a chunk out of my heart.  This life is hard.  I did not ask for this life.  But I did ask for my son.  So part of this life was indeed on the request list.

I love him so much it hurts.

I compare the Rukai who came to us vs the Rukai we were expecting with a music playlist I made for him before he was born.  The list I replayed for months on my iPod, an iPod which I lost just before that amazing day we finally met him.  The playlist, too, was called Rukai.  I was more upset about losing the playlist than losing the iPod because the playlist was the music that defined my thoughts for him throughout my pregnancy.  My worries for him.  My hopes for him.  It was optimistic and dead certain he would be 100% healthy which we now know is only true to us.  The doctors would have us believe differently.  Society will support the doctors. 

This is the reality.

I was going to make a copy of the music on that playlist and give it to him on an appropriate electronic device on an appropriate birthday.  Tell him how I was feeling when I made it.  Watch him make faces at those old songs mom used to listen to.

When I finally figured out how to replace the playlist, I re-created it on a new iPod so I could have it in the hospital when he was born.  I picked the same songs from the same music folder on the same PC.  And wouldn't you know, it somehow turned out different than it was the first time.  Different versions of the same songs somehow found their way into the list.  It wasn't the same as I expected.

And in all honesty - because what is the point of sharing if not with honesty - lo and behold, neither was he.  And instead of the playlist rolling while I was in labor, we had an endless loop of Adele's Rolling in the Deep as I recovered from a cesarean, watching him asleep in that hot box, agonizing in wait for the result of that blood test.  It just fit.  '...Finally I can see you crystal clear.'  Oh yes.

I will still give him the playlist.  He is still our Rukai.

But still, these six months we have ridden a rollercoaster.  We buckled up on the ride called Optimism and somehow have found ourselves careening up and down hills called Reality.  If 'rollercoaster' is not one of the states of grieving, it damn well should be.  And it is true grief that I feel on the dark days.  But why am I racked with sobs some days?  What exactly am I grieving over?  It feels foolish sometimes.  But that alone does not make it hurt any less, as desperately as I wish it did.

I read something yesterday about how parents of children with disabilities must let go of the child they expected and come to grips with the child they have been given.  (Dare I say as something of an agnostic, blessed with.)  But not only do I not currently consider him disabled, but I find the idea of 'letting go' of any version of our Rukai just downright cold.  Because diagnosis aside, Rukai really IS exactly the child we expected.

I think we are fortunate to have Rukai as our first and quite probably only child, because everything he does is 'normal' to us.  We look at him and see Rukai.  We don't look at him and see any different from any other six month old on the planet.  I am by no means cheerleading or saying 'look at how great we are dealing with his diagnosis' because I still very much rail against it right now.  And if that is denial, call me Cleopatra.  Buy me some snakes and a ton of gold baubles and build my ass a pyramid.

But I am saying once again, 'what is normal?'  Some days asking that question is the only thing that keeps me going, aside from the 24 carat grin of my precious squidge.  I live for that grin.  And I live with that question.  I burn with it.

Heavy heavy days and this rollercoaster seems endless.

Yet today after what seemed an eternal wait, he rolled over and I was bowled over.  I cried through my ear to ear grin.  I grabbed his hands and hooray-ed and scooped him up and gave him a million dollar cuddle.  Rollercoaster or not, so we will ride.

We came.  We saw.  We conquered.  Maybe not DS, but we sure as hell can destroy a monkey bowl full of pureed peaches.  And today that will have to be enough.

Friday, 17 August 2012

White stripes and pretty weeds.

White stripes...

That sneaky white hair showed up on my head again this morning.  How it managed to stay hidden long enough to grow six inches is beyond me, but once spotted it didn't have a chance.  I ripped it out unceremoniously along with two perfectly good red ones.  Chalk one up for collateral damage and move on.  Nothing to see here.  I must remember to stay vigilant.  Thank goodness they don't grow in larger quantities or I'd surely go bald with this prevention method.

The odd white hair isn't the only thing reminding me of my age these days.  Trying to get up off the floor is hard enough with both hands let alone with a fourteen pound dribble fountain squirming around in my arms.  I almost got stuck yesterday and ended up making my mother's noise when I managed to right myself.  It still beggars belief how fast I can walk crouched over, one hand balancing Rukai over my shoulder and the other trying to concurrently straighten out the stiffness in my back and counterbalance.  I may not be as fit as I used to be but damn, I'm good at multitasking.

Doing four thousand things at once is now a way of life, an unknown reflex as much as is breathing.  I sometimes stop and try to inventory everything I've got going, then forget what I was doing before said inventory-ing.  I can't recall finishing anything in the past six months other than dinner, a roll of toilet paper and the cup of tea I at long last get to making somewhere around 3:00 when Rukai is having his fourteen second nap.  This child is so good at sleep avoidance I should probably get my request for a Supernanny consultation in asap.  I guess I could always just turn on Fox News and let all the droning American political bickering knock him out.  That is, in the absence of the Proms.

...and pretty weeds.

Thanks to all the negativity and low expectations the scaremongerers - er, I mean 'doctors' - put in us from day dot, we remain annoyingly surprised at Rukai's interest in and interaction with his environment.  Each day we both look and say 'there's NOTHING wrong with this child' yet wait for the proverbial shoe to drop.  The clock tick tocks to that magic end of the first year when we are supposed to see him begin to fall behind his peers.  Although we think it's all a load of old bollocks and that we'd have seen some indication of delay by now despite what they know from those fabulously reliable studies done on two people, I hate that fucking clock.  So in my mind I have dug a hole in the garden and buried it like old Fortunato behind that wall of bricks.  For the love of God.  For the love of Belief.  I truly believe one day that clock will go quiet.  I don't know if anyone else does but if that is the best I can do for our boy - to keep believing, to keep loving, to keep nurturing - then I can do little else.

Joyfully, six months on, Rukai is showing no indication of any problems aside from a very lingering upper body muscle weakness which is more likely due to limited tummy time than to anything else.  They can label it low muscle tone all they want but this to me would mean he'd require intensive therapy to get that upper body in shape.  And here all he's getting is 'roly poly therapy' a la Mama and lo and behold those muscles are doing just what they're supposed to.  He has full use of both arms, and has been able to bring them to his center for the past couple months now, which is supposed to be of huge magnitude when low muscle tone comes into play.  So that isn't a problem.  He grips tightly with his hands and can use his arms to push, pull, and hold himself up, just like any other six month old.  That bit of neck lag is going the more tummy time he gets, and with tummy time being the solution for ordinary kids, they can officially take that 'low muscle tone' label and stick it in one of those places people don't talk about at parties.  Well, child-friendly parties anyway.

A lengthy, bobble-head-free supported sit on the floor yesterday blew my mind.  Where did this come from?  Like magic, the bobble has boogied.  Have those magic angels come back and whispered 'your Mama is getting a bit worried, so chop chop, get your sit on.'  Thank you angels, one and all.  All within the ordinary range of development.  So the tick tock clock can go join the 'low muscle tone' label and all those doctors on a muddy, sinking island somewhere and have a negativity festival the HELL away from me.

We'll have to now re-locate that sit to the garden the next time the clouds blow over so he can inspect the borders from a vertical vantage point.  He's fascinated with the weeds I have had no time to pull, since they seem to be of the pretty variety, with little purple and yellow flowers among them.  Last night he was a virtual giggle machine, letting out those awesome baby laugh bursts 'uh-HAH!!' while scoping out the silhouette of the plum tree against the faded blue horizon.  I think it's a nice view.  He thinks it is the most amazing thing ever.

I cannot wait to take him on holiday, to the zoo, the aquarium, the beach.  I only hope he's awake enough to enjoy them - the stroller and sling are like baby Nytol, and he's usually out cold within my first ten steps.  Perhaps the nap during the drive will take the top off that need-to-nap-now-am-feeling-so-sleepy baby thang.

Everything in his eyes is new and beautiful and fun.  His innocence does not notice milestones and fear and worry (and white hairs), only love and comfort and security.

Oh to see through the eyes of a six month old again.  Even the weeds are pretty.

Wednesday, 8 August 2012

I believe.

Just ran into the midwife I saw about a dozen times and could not for the life of me remember her name as we were speaking.  And this is the one I liked.  We had an innocuous conversation about baby rice vs vegetables.  And I was sort of annoyed to have bumped into her.  The one I liked.

I knew that regardless of what she said I would do what I was planning and no longer needed to take her advice.  The surprisingly nameless 'somebody that I used to know'.  What a catharsis.

Methinks my mind is already washing the bad shit away and moving forward.  This realization filled me with joy for the everyday beyond what I've felt in many many months.

As I thought this, I also realized that I do not pray.  I believe.  This is a pretty significant difference that some friends will understand and some will try to challenge.  I'm glad I have both types of friends.  But I am more glad that I am of the kind who believe.

More imporantly, our squidge has successfully completed the 'grab the toes' challenge.  On the right foot.

Off on the right foot.  Perfect.

I had the Athletics on TV at the time, and this to me was of far greater excitement.

I have a new hero and his name is Rukai.

Tuesday, 7 August 2012

Life in the baby tornado.

I have discovered the secret to a serene morning - it's called 'waking up before bubba'.  This enables me to do all those essential things before the daily baby tornado kicks in, which include sitting up, wiping sand from my eyes and having a cup of tea.  It's been so long since I've been able to have a morning cuppa I can barely remember what it tastes like.  You can forget about coffee unless it's prepared the night before.  That must take at least thirty seconds to sort out when I only have the five.

Admittedly in the past few weeks I have been using up the entire allotment of 'mommy time' watching the Olympics.  This is where the baby sling has really repaid its cost when I can pop him in it and pace while watching the gymnastics.  He has that elusive nap and I get more mommy time.  It's a total win-win.  Shame I don't win any medals for it though, I'd swap them for some chiropractor appointments.

I still cannot believe the Olympics are being held in our own city, and even more so that we've been blessed to attend four magnificent events baby free thanks to T's family looking after Rukai.  I think we could've stayed in the Olympic Park for a week and they'd still be glad to be with him.  The joy is truly reciprocal and I love to see him grin at his relatives not only because it's just so cool, but also because they need to know how constant that grin is.  The constancy of that grin and the innate curiosity behind it shows us that he is firing full whack on all cylinders.  It takes my worry and shreds it.  One of those doctor-numptys wrote in his report 'he is a sociable baby'.  Don't need your notes to know that, dude.  So we continue to be doing something right, which in this kind of situation beats the hell out of doing something wrong.

Back to the Olympics, which we are so much enjoying we realized it would be a major act of wrong-ness to not bring Rukai to the Games at some point.  So the three of us are going to Paralympic Judo and I'm going to take Rukai alone to some Paralympic Athletics.  This latter bit has put the fear of God in me, mostly because although my seat is up pretty close to said God, and on the opposite side of the stadium to the sprint start line, Rukai will surely out-scream the starting gun at one point or another.  I can only hope that the folks around us are forgiving and celebratory and fall in love with how cute he is in his Team GB kit.  Barring that, we'll have to hang out in the walkway and do a lot of up and down the stairs.  To hell with Pee Wee, this is Mommy's Big Adventure.  It makes taking the tube across town look like a game of checkers.

It does get better.  They have finally installed the elevator in our train station.  So I no longer have to try and get up and down all those stairs with baby sling plus whichever-buggy-required-for-destination.  Although whenever I do get going across town, I got a hot tip from a friend yesterday on managing escalators which I will only try outside of rush hour.  The last thing I need is some uptight doofus in pinstripes 'ahem-ing' behind me for delaying him ten seconds by blocking the side of the thing.

But I really do love taking Rukai out there in the world.  The world that seems so big to me must seem galactic to him.  Every time we go out, his eyes are like moons, mouth always in that perfect 'O', soaking up as much as he can before the movement knocks him out again.  Then he wakes up in a station, a bus, a park, a living room, an office, a shopping mall, wondering 'where?' and 'how?' and 'mommy, are you still there?'  I peek around the stroller, or squeeze his hand in the sling, or find our reflection together.  That grin, that amazing grin, blooms like a perfect rose.

These are somewhat random thoughts but these too are somewhat random days.  Which is unsettling when you are used to routine as are we but then we realize he likes routine so let's make some.  He's getting used to it.  Barely a complaint at bed time and he giggles at the nightlight on the monitor as it soothes him to dreamland.

So simple are his joys, and so complex are his needs, and so vast is our love.  I look forward to each and every tomorrow.  Even in the funnel of that baby tornado.